By Dr. Thomas Hoess
Taking care of an elderly parent from out-of-town is not easy. It’s the late night calls from the group home that your Mom is on the way to the hospital because she may have a blood clot that causes your heart to race. It’s when the phone rings after 10PM that you worry it’s the final call, the one telling you that your Mom passed away.
It is challenging. Harrowing. Stressful.
In my family there’s only my sister and I. Sometimes I think having a bigger family and spreading the caregiving around would be easier. I live in Indiana, my sister lives in Colorado, and my Mom lived in Arizona. She couldn’t live with one of us because her health couldn’t withstand the cold. So we became what is termed as “long distance caregivers.”
Plan Ahead
Did we plan for this predicament? No. My father was extremely healthy and my Mom was always sickly ever since I was young. She was diagnosed with rheumatoid arthritis and lupus when she was 25. As a result, her lungs eroded, her kidneys had problems and she was confined to a wheelchair. However, my Dad was extremely healthy, had a generous pension, and planned on taking care of her until she passed away.
Great plan. Too bad it didn’t work.
My Dad passed away suddenly from a heart attack. He had no long term care for my Mom. She was on Medicaire plus private health insurance, but her medical bills were still exorbitant. When my Dad passed, his pension got cut in half, so my Mom needed to live on $3,000/month. Sounds like a lot, but it’s not. She couldn’t remain in their home, because her daily care needs were too great.
At first we had her in a skilled nursing facility. This was $8,000/month. Then we moved her to a group home plus had a caregiver once a week to take her to her Doctor appointments. Her group home was not plush by any means, and the cost was $3,600/month. Add up her prescriptions plus health care and her daily expenses, and the cost was $6,000/month. That’s more than most people make in a year.
Paying The Bills
I am a Doctor. There is a myth that all doctors make a ton of money. Unfortunately, with the economy making it difficult for people to pay their healthcare bills and the difficulty in getting insurance to pay, I was not rolling in the dough. Plus, I had my own family to support and you tend to spend what you make, no matter what your income level.
So I worked three radiology jobs to help with the extra expenses. My sister could not help financially, so she would take the phone calls, talk to my Mom every day, and fly to Arizona every two months so my Mom felt loved and not abandoned. She enjoyed going there but I didn’t – I found it depressing.
We were lucky I had the opportunity to make the money to support my Mom. I know that a lot of families do not have this ability. Here’s some advice that I learned the hard way:
- If you think your parents have enough money until they pass, chances are they don’t if they need long term care.
- If you can get long term care insurance or nursing home insurance – even for yourself – get it!
- If you are trying to take care of your parent’s long distance, you’ll need a caregiver. Even if your parents are in a nursing home or even if they can drive themselves, it will be difficult for them to do the cooking cleaning, getting to doctor appointments, etc.
- If your parents tell you they are “fine” on their own, don’t believe them. Go see for yourself.
- If your parents still live in their home, get a remote monitoring device in case something happens. It will bring you some security and peace of mind.
I assuaged my guilt for not going to see my Mom by saying I needed to work to pay her bills.
As my sister says: “Writing a check is not the same thing as being there.”
Don’t tell her this, but she’s right. I thought we had a good division of duties: I helped financially and she helped emotionally. However, the burden of taking care of a parent with a chronic illness can be overwhelming, especially when you don’t live in the same town. “It takes a village” as the saying goes. Unless you are an only child (and even then there are friends and extended family), everyone has to pitch in when they can.
Siblings Sharing Caregiving Duties
In certain ways it was a blessing that it was only my sister and I. We didn’t argue about things. Time and money seem to be the two things siblings fight most about. Since my Mom died penniless, there was no inheritance to bicker about. I have heard too many horror stories about siblings who fight over their parent’s care. My wife is from a big family and they are always disagreeing. All of the siblings live nearby, so the responsibility should not fall to one person. However, this isn’t always how it goes. My wife is the only one “who doesn’t work”, so most of the tasks fall to her.
If you’re in this predicament with your brothers and sisters, here are some articles that may help.
When Siblings Fight Over Parental Care
Caregiving With Your Siblings
What To Do When Siblings Can’t Agree On A Parent’s Care Needs
I know this. My Mom’s caregiver was a Godsend. Not only did she live close by my Mom, but she truly loved my Mom. They were together eight years, so “Shannon” became a member of our family. She always kept us informed about what the doctors had to say or what was really going on, because my Mom would get easily confused. She had the “local pulse” as I like to say.
Whatever you do, don’t let it turn into a bad episode of Family Feud!